The Palsy Podcast - Episode 22 - Ellis Palmer

Ciaran is joined on episode 22 of The Palsy Podcast by Ellis Palmer. Ellis is a journalist who's worked for BBC World Service. Ellis studied Spanish and politics at University, and talks about his experience at uni, and how it led into his career. Ellis also loves sport, and talks about how he got into power hockey. Listen to learn more!

https://worldabilitysport.org/sports/international-federation/powerchair-hockey/

Transcript

SPEAKER_01 0:01

Hello and welcome to the Palsy Podcast with me here in the show. I'm a playwright, screenwriter, and podcaster from South Wales. And see as Mark he is Silver Palsy Awareness Month to Market, I've decided to interview interesting people who have Silver Pulsy from Wales and beyond every day in March. If you like this episode, please stay tuned for more throughout the month and like and share. Now enjoy this episode of the Palsy Podcast. Hello and welcome to episode 22 of the Palsy Podcast with Make Q and Vitch Channel. So this is the podcast that I'm making tomorrow. So the Pulsy Awareness. And I'm talking to interesting people who have CP through the run to march. And today I'm very lucky to be joined by Alice Palmer. How are you doing, Alice?

SPEAKER_00 1:12

Hi Kevin, how are you doing? It's a pleasure to join you and speak to you today.

SPEAKER_01 1:16

It's lovely to meet you. Thank you so much for giving up your time uh today. So I'm gonna kind of open up with how I start most of these episodes. Like, what was your experience growing up with CP as a kid?

SPEAKER_00 1:35

I mean, growing up with CP is always a bit of a weird one because I think you would have to start at the origin of the origin of a CP to get the full notion of a person and take it from there. So I was born extremely premature, born 24-25 weeks. Uh I was born at 15 weeks early, so extremely premed. So I was born in October. So I know I was born in I was born in July. I wasn't supposed to be born until October. So you can imagine that with a premature there was a twin. Unfortunately, my brother um Jonathan passed away um from complications and infections and everything like that. Um but it's very, very difficult for my parents, I think, really, um, to have that situation. I wasn't diagnosed with CP until I was two and a half. So that was quite a bit of a shock for my parents and my dad. You kind of go down the rabbit hole, as my dad always says, you go down the rabbit hole with looking, whatsoever. You kind of look at worst-case scenarios. I think my parents did it all the time. They've got you know, the very kind of worst-case scenarios.

SPEAKER_01 2:38

I I don't know if your parents were told the same as mine, but my parents were basically told, oh, you won't walk, you won't talk, you'll have profound learning disability. Exactly.

SPEAKER_00 2:51

Is that is that you won't talk, you won't see, you won't hear, you know, you'll have a learning disability, and really difficult conversations to have because I think that's oftentimes, you know, non-disabled people's experiences. When we hear the word CP, that's what I've even had that in my life, and it's really frustrating, it's really weird. So um, yeah, so my mum and dad were like, right, what's out there, what's available? They found the conduct conductive education person in um on the real. We were appointing a bunch of parents, and they got involved with that, and then I had really intense physical therapy a couple of times a week with her, which brought on my development really well. I mean, I used to go to Scotland to have uh conductive education, and then when I was nine, ten, the conductive education centre opened up about 10 minutes down the road from me here, and that made a big difference in terms of my physical physical ability, being able to have that intense physical therapy um that I needed to be able to thrive, to be able to be myself. In terms of school, um I went to a special school nursery. I was actually borderline special school mainstream when I was four or five. So going to um going to secondary school. But as I was born in July, my parents kind of had the option to delay me here, but the shows test showed it might be okay to go to mainstream school, even though it's borderline. So I went to um the only school that was accessible is the Catholic primary school down the road. My mum went in for a meeting with a headteacher, oh Mrs. Palmer, but um, we need a letter from your parish priest um to enable your son to come here. Mum said, Right, okay, I'll go back to Derby, get a letter from Parish Priest, and just thinking, oh God, this isn't gonna happen, this isn't gonna happen, this ain't gonna work. It's the one school that had a level access, it's a primary school that I was able to go to as a disabled person, um, within like a half an hour radius of home at the time, back in 1998. So um so about that, so we we um yeah, so I mean on the way out, my mum bumped into the priest of that school, who ironically was I think it was the priest who gave me my baptism, he was the priest who did my brother's funeral, my brother died, and he knew the family. He knew he knew me, he knew my grandma, he knew my dad. Sorry, how's Walter? How's my dad? How's he doing? How's football? Blah blah blah blah blah. How's Alex? Oh my god, he's four or five, he's coming to school next year. Oh, um, Father Ivan, you you know Mrs. Palmer, said the head teacher. Oh yes, yes, I know the family, yes. Oh, no problem, the assumption come here, Mrs. Palmer. That made the difference in terms of me being able to get into the local, local primary school, local Catholic primary school, but with level access and made a big difference. And then from there. Again, the weird thing about primary school is you kind of can get married coddled by TA teaching assistance and variety. But I actually had quite good TAs at primary school. My parents were quite hot on the school in terms of encouraging me and encouraging my physical development and used to go out walking every day and you know, playing football.

SPEAKER_01 5:58

It might be worth mentioning at this point how your CP affects you, just so people don't mind out.

SPEAKER_00 6:05

I'll come to that in a second. So um, so yeah, walking around on my frame with with my mates playing football, that was great. And then about 9 10, still walking around with my mates, the NHS decided they were giving us an electric chair. So fine, no problem, brilliant. I still remember driving this chair around um my parents' house, driving it like a ton cutorial, round my house, moving doors, everything like that, and that made a that made a big difference. And then that was great, but then when I went to secondary school, the thing we found was the school were very, very focused on me not getting out of the chair, using the electric chair, not being able to play with my mates on the pitch, on the football pitch at lunchtime or break time. So actually, what I ended up doing was going in my electric chair one day playing on the football pitch. And he did say pulled off. Matt never happened again. So um that was difficult, that was difficult. But then the good thing about my secondary school is in year eight, they hired a bunch of local rugby union players, and I still remember it, but came in big, bulky guys, brilliant, brilliant people, and they made a massive difference. Yeah, Alice could do P, Alice will come in between with me, Alice will lift ways, Alice will do that. It was brilliant. So, from a growing up perspective, that made a big difference, you know, because I think oftentimes with CP in the school system, you don't necessarily have um that great relationship with your peers sometimes because you know you are set next to the TA a lot of the time in school. And that can be that can be a bit isolating for people. Actually, having TAs who were relatable, who gave me confidence to go and do things made a big difference. I mean, from there I went into 15 for 15, the local VRS teacher pulled me over one day, said Ellis, I said said, Well, you're looking at going to six form. I said, I'll go to the local six-form college down the road. And he pulled me over and he said, Elis, don't just look at the local six form college, look at school six forms as well. But a big thing for me, being a wheelchair user, being able to get around and bow places independently by myself, yeah, was being able to get the bus places. So I went, right, I want to look at all the six forms on this on this bus route, the four, three, seven bus route, because it stops just right outside my parents' house and right outside indeed I'm speaking to you from now. So took me off, uh, there's quite a couple of schools within a half an hour radius. Right, let's look. So we went looking online and we found the local girls' grammar school on the route and had a six-ball, but we weren't sure if they upset the lads. So the career bag and was like, you know what? Just go to the open day, throw caution to the wind, go to the open evening and see what happens. We arrived at um, sorry, do you upset male students? Oh, yes, yes, we upset male students, yes, yes. We only take 12 a year. That was that. But oftentimes I talk about the soft bigotry of our expectations around disability as well, and that was a real problem during the education system. So, my second year school, secondary school when it came to GCSEs, they gave me all C's apart from history at B because I really enjoyed history as a subject at school, and then in year 10 they upgraded all the grades to all B's and maths at a C. Weird enough. Start of year 11, we were like, yeah, we'll give you a B in maths. But in the comments, when it came to apply into the girls' grammar school, they wanted to be they wanted a B in maths. The school sent over the wrong predicted grades for me, and I got rejected. You know, my dad went in for a meeting because we're really concerned about why I've been rejected and everything like that. Well, this is the record which sent over. My dad got my predicted grades out there, but I bought home be and it showed a B in maths. So my head teacher said, right, if he gets a B in maths, we'll take him. So that was that. It is the sliding doors when it comes to education, really. That sliding doors.

SPEAKER_01 10:09

Do you think do you think those predicted grades were the result of ableism? Yeah. Do you think there was ableism involved in that?

SPEAKER_00 10:19

Yeah. And I think that m I made a big difference. So, in terms of my CP, you asked me about my CP. I've got quite a predictive kinetic sober poly. Would be uh, what does that mean? What does that mean in essence? It means I've got a brain injury, brain problem, that's the server posing bit, that's the easy bit that we all should know, given that we're listening to the posing podcast.

SPEAKER_01 10:40

I mean, we're in episode 20 right now. People should know it's a brain injury.

SPEAKER_00 10:46

Exactly, exactly. And then the cotropic bit means it affects all four limbs. And then the disconnected bit means it kind of affects movement, balance, coordination, all that element of things. For me, I can walk a little bit mostly up and downstairs, not gonna lie. I love I love walking up and down stairs, and I love walking on planes for some reason, even though it knackers me and puts a lot of pressure on me. And then um, and isn't great when you know you've got a big crowd watching you, but that is what it is, it's gotta be done sometimes. And then every um, yeah, I mean basically I've got no balance really. So I can't, I can start to transfer myself to and from a chair to my toilet or to them from my chair to my shower, or to in front of my bed, or to in front of my car, but I can't really balance myself. So the minute I let go of what I'm holding on to, I'm gonna end up in a heap on the fork, Kieran, basically. So that that's that's the nature of things, and that can be uh that can be really difficult. Not difficult sometimes, but you know, people just I think oftentimes, especially when people meet you on Zooms like this, they sort of go, ooh, you know, at least must be a paraplegic sort of thing. But actually, no, I've got CP. And you know, trying to explain that to people, trying to explain sometimes how draining and tiring, you know, physical stuff can be and everything like that really does take a lot out of you, mate.

SPEAKER_01 12:12

Yeah, because it's it teases a lot of energy, like I get this, trying to explain to people what it is, because maybe they've got one picture of CP in their head, they met one person. Like, if you learn anything, audience from listening to these podcasts, you'll know that everyone is affecting differently and everyone's got a unique kind of story with C.

SPEAKER_00 12:37

I mean, sincerely, the thing I always say is kind of you know on a good day, you know, when I've had at least five, six hours sleep, I can do most things, I can do anything. And a really good day is like eight, nine hours sleep in bed, and that's brilliant, sort of thing. On a bad day, when I've had intermittent sleep, when I've had this, that, the other, just don't ask me to focus on anything. Don't ask me to focus on anything requires me to balance or coordinate myself or anything like that. Because you just know, no, it's not gonna happen. My legs are gonna be flying up in the air. My right hand, my left hand's really good. Hello, left hand. My right hand is known as uh wavy Davy because it just goes up in the air, and then I have to use it, it's got decorated air I think it's coronated reflex or something like that. So I have to kind of use my left hand to bring it down and put it back in position. And my legs always look a bit messy, but you know, they work for me, and that's the most important thing, but they work for me, but they don't you know they don't look perfect. I think that that's kind of oftentimes, you know, you're trying to explain to people what living with CP is like, and undisabled people that it is, and you can't, you're really strong because you know, I say on a good day I can do this, this, this, this, this and that. On a bad day, you know, it's really difficult to function.

SPEAKER_01 13:59

It's different every day, though, isn't it? Every day is different, and every day we come with new challenges that maybe you haven't feel it. Oh, that's a bit different. Where's that come from? Sort of thing. But it's hard. But I hope through these podcasts that people get a range of different people's experiences so that they might understand a bit more about what CP is. I'm gonna move on. Yeah, I'm gonna move on slightly early. So, where did your kind of interest in journalism come from? When did you think that's what I want to do?

SPEAKER_00 14:31

If I'm on this video now, say this completely by accident. Uh how does somebody end up working at the BBC World Service by accident? Right. Um yes, it's an interesting one. Uh so I always wanted to go to politics when as a kid, teenager, even going through university, wants to go and be in politics and advise in public politics. That's a real realm that I saw, but I couldn't, especially growing up as a disabled person. You often find that you know, there's so many decisions that are taken out of your hands, you're constantly having to advocate for yourself, you know what I mean, in terms of being able to do stuff. So you become a very fierce self-advocate, and that has its upsides in many, many ways, it also has its downsides, especially with people who aren't used to being around disabled people. That's really what I wanted to go do for a career when I was when I was at school with a teenager. Go into politics really make a difference, really make an impact.

SPEAKER_01 15:27

Do you want to be an MP or that sort of thing?

SPEAKER_00 15:31

Um yeah, that's kind of kind of what I mean. Yeah, reading, reading between the lines. But uh, but yes, yeah, that's kind of what I want to go do. Um, because I think you can make a big difference through that, really, which makes it you know, and that that's something that really mattered to me. Not just you know, being on reserve to do that, but being on reserve to have an impact and not just to build yourself up, but build the people around you up, which really, really matters. And to me, and then um I went to Birmingham for University, I went to the University of Birmingham to study uh politics and Spanish. Um actually the official degree title is European Studies, Open Bracket Politics, Close Bracket, and Botany Languages, Open Bracket Spanish and Catalan, Close Bracket, because my university offered me the opportunity to do um Catalan as um basically they said in the first year you have to study another language. Yeah, in the Spanish department, you have to study another language, it's not Spanish, so it could be Portuguese, it could be Catalan. My parents and friends and friends at the time really wanted me to do Portuguese because at the time I go to uni 2012, the 2014 World Cup, I think was in uh Rio, wasn't it? Yeah, so no, they uh they really wanted me to go to go to that to speak Portuguese to that, but no, I said Catalan was politically the more interesting language, so that's what I went and did. I did Catalan. Needless to say, I loved it. I went and did math. University miscountry, I'll be honest with you, Kieran, wasn't a great experience. I didn't really enjoy um university misjurisdiction, but I got lucky in that at the time I was going to the University of this country misjurisdiction, was still a member of the European Union, so I was able to partake in the Erasmus scheme, and I went and did um my third year of my undergrad in at the faculty of law at the University of Barcelona. Again, my CP intersects with this is that I um I was going to do um gonna look around at various universities, but I was I'm not sure what the access is like in Spain, you know, because in this kind in this jurisdiction we've got like DSA and all things like that, note takers and lectures, and I didn't really see any of that infrastructure around in Spain. So I was actually all set, tell my university I didn't want to go in the earboard and make sure to look at other options as a reasonable adjustment. Um, but the university, oh no, no, we'll make it work. Here's Alice University to get in touch and see what access they've got. First university I went to was in Vitoria, in the Basque Country. Lovely capital capital of the Basque Country, really nice university. Um, me and my mum went for a look around because me to the two I'd chosen. Really nice university, incredibly green city, brilliant to get around as a city. Really mobile, really green, lots of parks. Lovely. Downside to Victoria, it was an hour and a half from Bilbao, and an hour and like 20 minutes from Bilbao Airport by coach. There was no train. Oh, that's not really. And my mum, being my mum bless her, she was like, What are you gonna do for trailbreaks then? What are you gonna do for trailbreaks then? You can discount. How are we gonna get over here if something happens with your chair and you've got it and you've got a problem, you've got a real problem? I'm like, Yeah, okay, I kind of see the point. So I really wanted to go there, could have pushed, could have pushed harder for it, but then we went to Barcelona and miracle. Well, miracles happen, but I've I'll come to that now, which is we got to uh Barcelona. First night was fine. We got on the metro, 95% of the metro is accessible in Barcelona, which is brilliant, by the way. However, the station we were trying to get off at wasn't accessible. So visual maps out, and it was out. We're gonna go to this other station and then get a bus. So we're coming out of this other station, and as we're coming out of the other station, my wheel clips a ticket barrier and breaks. So the chair, but the chair was kaput, the chair couldn't be electric anywhere at all. So my mum being my mum determined to make this meeting at the university after me around Barcelona for two days because the wheel are broken, which was an absolute drama. But we got to the university, and again, my mum with a list of questions you know, how do we make this work? For her peace of mine more than anything, because I think, particularly as a parent of somebody with CP, it's a very nerve-wracking experience because you know, yeah, there's a lot you don't know, and it's difficult to admit you don't know stuff as a parent. So we went to the university. My mum was like, right, what's what's the accomplishment? My mum's questions for this esteemed professor of political science, he then became a very good friend, actually. But he was like, right, you know, um, what's this what's academic stuff fine, no problem, brilliant, we'll take you. Yeah. What do we do? My mum's chief question was, is there any accessible accommodation in here? Where is it? We couldn't find anything on the website. And this professor goes, Oh, yes, there is um accommodation, I think, across the road that has a rent room. So we called him up. Oh, yes, yes, we have a rent room, come over in 10 minutes. So me and my mum went over for 10 minutes, and they didn't just have a rent room, they had a whole cavernous bathroom toilet. It was brilliant, it was really, really good. But water did come out of the bathroom every so often, so you had to be a bit careful. But it was fantastic, it was great. You had a good experience, they they cooked all my food for me as well. So, all my mum's problems about you know how is Arius gonna eat. They cooked me three meals a day. I had a cleaner come in and clean my room every day, uh, and I and I went back home to myself. It's having a four or five-star hotel. I got really rocked up in Barcelona to the extent that I went over and did my master's over there as well in um contemporary democracy and nationalism. Right. But I then decided, mmm, I don't want to go and do politics really. Well, I looked around and it was all in Oxford Elite, and I thought, mmm, and broke from an old western who'd been to Birmingham. I don't really think I'll fit in there too well. So I was like, um, shall I go do the academics? I went and did my masters in federalism, nationalism, and current democracies at the I'm both able in Bosana. But I didn't really enjoy that.

unknown 21:58

Oh.

SPEAKER_00 22:00

Working since my family, since the start of my family year at uni, I've been working in the tape library, tape library sky. But for tape library skies, I'm getting paid to watch football matches and rugby league matches and DL matches. It was a brilliant experience. So I did that, it was a great job. I actually got a bit sick of watching football, actually, but that's another sort. And then I um did that. I mean, some and did a bit of social media management for like one of my professors at university for his news website and um other things, social media for coffee shops, all that all that sort of thing. So I really enjoyed all that, and then um yeah, somebody got in touch with me, it was working at BBC Radio Humbers, I don't know since I was 13, and said, hey, you should apply for the scheme that maybe BBC have got going for disabled journalists.

SPEAKER_01 22:52

Right.

SPEAKER_00 22:53

So I thought, you know what, I'll apply, but come on, maybe somebody might better than me with my mediocre experience sort of thing. You know, okay. And then two weeks later, oh, you got an interview. I'm like, wasn't expecting that. Interview at BBC, BBC um broadcasting house in London. So I thought, right, you know, not gonna get the job, but it's a really nice day out for me and me dad. So we might as well go and enjoy it, and maybe somewhere down the line, some freelance work will come of it.

SPEAKER_01 23:26

Yeah, but you've got it.

SPEAKER_00 23:28

Well, dear reader, that was eight years and ten months ago. Um I'm stuck at the BBC still for now.

SPEAKER_01 23:35

So tell me tell tell me a bit about the job then. What what is the law and what kind of stories are you covering?

SPEAKER_00 23:42

I came in on a scheme called extending digital news for uh disabled journalists, put basically putting it in the digital news department. I worked on the website for a year, on the BBC News website. It was great fun. Um getting to write write stories and do live pages, and my very first day I was translating stuff from Catalan to English for from press conferences and all that. It was brilliant, it was a great experience. That's probably the high point of my BBC career, actually, the first 10 days, because I was the only person in the newsroom it seemed he could speak. Was it was it during COVID?

SPEAKER_01 24:16

Was it during COVID?

SPEAKER_00 24:18

But like you know, it was good fun. I I enjoyed it and those first 10 days, and then I worked on the website, and then I went from there to the digital video desk, so I basically edited loads of videos together for BBC, the BBC website, social media, Instagram, Facebook, not TikTok back then, Twitter, all that element of things. Really enjoyed that, really enjoyed developing that element of technical skills as well. And I went, right, okay, I've written for a website, I've done a year of that, that was brilliant. I've edited digital videos, I've learned how to edit video, really great skill going forwards. And at the time I was like, right, I want to take something that's gonna get me up to five live in in Salford. Um, this is 2019-2020, which is still where I'll probably view my career at some point. Um, because I'm I'm home in I work remotely in the Northwest just for support needs and everything like that. We'll come to that bit later. And that that, yeah, so that that that was that. So I was like, right, okay, I take a job in I thought I was applying for loads of jobs, and this one came on this program called News Hour on the BBC World Service. And I thought, okay, I'll apply for that. I listened to it, it sounded like something from 1985, Kieran. You know, I couldn't quite believe how kind of all. What is it?

SPEAKER_01 25:40

What is news I think?

SPEAKER_00 25:44

It sounded like something from 1985, so it was international news, but it was kind of sitting at your hot coca sort of thing. But I kind of I did be interviewed actually from my mate's coffee shop in Barcelona by state, and it actually been ended up being delayed by three hours because uh there was a train strike on that day, and people couldn't get into the office. Oh god. Anyway, did be interviewed, laid out all this, you know. It sounds like it's from 1985, there's no gender, no diversity in there, everything like that. And somehow they they offer me the job. So news hour, I've been there six years now, scary thoughts, six and eight years. It's kind of international news, it's kind of um war, death, famine, climate change occasionally, and Donald Trump a lot of the time.

SPEAKER_02 26:36

All the fun stuff.

SPEAKER_00 26:38

So all the fun stuff indeed. Um, it's all it's all that it mostly goes out on BBC World Service, but of course, crucially, it goes out to uh BBC's American public radio partners as well. So it goes out to um I don't know, WAMU and stations like that all around the United States. So 450 of them in the US. So if ever you meet an American person, you say, you know, work on News Hour. If they're a public radio listener, oh I got that program, it's brilliant. I'm like, yeah, okay, I make that happen.

SPEAKER_01 27:11

Um so yeah, what kind of stories were you interested in? What did you want to cover? What did you really want to achieve as well?

SPEAKER_00 27:19

I um what I what I love to cover is stuff that really affects people, stuff that really gets under people's skin, and stuff that makes an impact. So the coolest thing about the BBC is it's a bit like Disneyland. You know, you get in, you go on one ride, you think it's brilliant, and you go for the next one. Because there was loads of rides you can go on, really, and that's great. Um, but things I've loved doing at the BBC, I've did loads and loads of 4am starts for the weekend breakfast programme where I get up at get up at 4:30, dove into the news, have a call with the person producing the breakfast slots at 5, and then I would have an hour to write up a script before I'd be on 15 local radio stations up and down England, Scotland and Wales sort of thing. So you'd have like you'd have a seven-minute slot for each, and you'd have to kind of give them the big news story of the day. I love that. That was a great gig. I also used to present a bulletin on BBC 3 called the catch up, um, which is focused at younger audiences. So words like inflation were banned, you have to use price rises and you had to really explain things, which is great as a journalist, because some sort it really gets you outside your comfort zone.

SPEAKER_01 28:33

Making the news more accessible as well to young people and getting them engaged in politics, but accessible in all senses.

SPEAKER_00 28:42

I think that's something society needs to come to terms with. Because if you're able to work from home and you're able to work remotely, it's a lot less energy that's required. I'm really lucky that I can do this. I mentioned I used to work on the digital video desk.

SPEAKER_02 29:22

Yeah.

SPEAKER_00 29:22

Well, for the early shifts there and the early shifts on the online desk, which were kind of 6am, 7am starts, I used to get I used to get up at half past three in the morning. Oh, I couldn't do that.

SPEAKER_01 29:34

How did you do that, Alice?

SPEAKER_00 29:36

I look back at it and I'm like, yes, how did I do that? I don't know. But I used to have to have my breakfast, you know, have a shower, get a taxi again, get a little time. I was living down in London, so getting a cab in London anytime past half past six is a bit of a nightmare. I used to have to get the get the taxis earlier that could at like five o'clock, and it would end up being cheaper. Because of course, you're balancing my get up against things like access to work, and access to work would only give me 35, an average of 35 pounds for taxis. So every taxi ride had to balance up, so the average came at about 35 quid, which is brilliant, until you get in the taxi back at 10 o'clock at 10 or 11 o'clock at night, and it's 45 quid on a Thursday, Friday night to where I was living at the time. So that will be outside the average. So I've then had to get taxis early in the morning to balance down the average or disability bureaucracy stuff, but actually, I think this is for stuff we do in the background, but people don't necessarily see that.

SPEAKER_01 30:43

Yeah, and the admin that goes into planning a basic journey, whether it be for work or night out with your mates, the plan, the planning involved. Oh, it's not and the uh the extra cost as well that people maybe don't realise.

SPEAKER_00 31:01

Yeah, I mean, again, when I was giving Danny London, I went one night to a comedy event. It was brilliant, really, really good comedy event. It was at 20 quid at the Camden Irish Centre. So I went and I it's£40 in a taxi there because there was no train station and no bus route nearby that was accessible. It would have been two buses in two hours, or you know, the tube wasn't accessible in my area, which again, only 30 for about 30% of the tubes accessible in London, probably even less for me to get around independently by myself. So that's a a real nightmare you come up against. And then and then on the way back, because again, there was no for no tube, no bus, anything like that. It ended up being£45 on the way back. So for a£20 gig ticket, Kieran, I'd spent 85 quid. I'm like, Well, here's the cost of me being more social, you know. I do it, and then the next day I'm unable to get about a bed because I'm completely knackered. You know, completely shattered.

SPEAKER_01 32:03

And it's cost you four times more than it would a non-disabled person.

SPEAKER_00 32:09

Exactly, exactly. And these are the things that I think people don't realise, you know. So, yeah, so that that that's a big difference. And then, you know, again, I made the point about remote working, but I think it's worth saying again. But the government always talks a lot about wanting to get more disabled people into work. I think as a disabled person, one thing that employees could do to really enhance the number of disabled people in work is offer remote working. Because it's not that we're not capable of working, we are. We just need reasonable adjustments in we just need adjustments and price to enable us to work. One of those is remote working. You know, our batteries might start with 800%, but by getting about a bet, they drop down to about 60, if you get me really sometimes. So, you know, it's all that extra effort that people don't see.

SPEAKER_01 32:56

It's not that people can't work, people can work, but they just need adjustments to be able to work and try to get everything to be put in place for us to be able to function effectively and contribute actively. I think that the narratives that have been around the last week about the demonization of disabled people and the reluctance to talk about reasonable adjustments, just it's it's scary, really.

SPEAKER_00 33:23

Yeah, and when you go into the debate of what is a reasonable adjustment, how reasonable is the adjustment? It's it's a really frustrating conversation. But I always say, look, with disabled, you know, we constantly disabled people balancing up in our heads, you know. This is the adjustment. Is this adjustment reasonable? Yes, no, you know, where do I need to get to? How do I need to manage this? How do I need my life to go? And what adjustment do I need? But it was because of internalisable, I don't really think a disabled person is ever going to make an unreasonable adjustment, if you get me.

SPEAKER_01 33:55

No, I understand that little thing. Oh, am I asking too much? Is it other yeah, God, internalised able to do it?

SPEAKER_00 34:06

It's hard. But but also just for accessible housing killing as well, oftentimes tends to be in areas that are far from public transport, or tends to be in areas that you know aren't easy to get to and easy to get from for people. So disabled people are oftentimes excluded from the labour market in that way as well.

SPEAKER_01 34:25

Like I'm I'm I'm 30, I'm still living with my parents, and I want to move out, but trying to find accessible places in Cardiff, which is where we want to move to, because that's where the work is, is a bit of a nightmare. There's very little available that is accessible for me.

SPEAKER_00 34:44

I mean it's the things that people don't see, but then if you make it so that reasonable adjustments are available, so you're able to work from home and you're able to have the technology from work from home, suddenly those opportunities and those options open up to you in quite a significant way.

SPEAKER_01 34:59

I want to move on slightly, it's been really interesting talking to you Alice, but I want to talk about power hockey. So, what is power hockey and how did you get into it?

SPEAKER_00 35:13

I mentioned to you before I was um at school, I played football on my walking frame with my mates at break time, and I went to secondary school and I tried going on my walking frame. The school wouldn't let me do it. Health and safety, they said, I'm gonna try going in my wheelchair, I'm a football pitcher on the school guy. Ah, no, we said you couldn't go in your walking frame for health and safety. You definitely can't go on your wheel. I'm a football pitcher in your wheelchair for health and safety. That put me off team sport from the age of 11 to the age of 29. I thought, hmm, football's not for me. I mean, one day, sport's not for me. Team sport, that is. And then one day I was scrolling through Facebook uh on a lunch break, and I came across this post for power football at the Green Bank Sports Academy in uh in Liverpool. Okay, I'll make a note of that. And I turned up and you know, it's full of gumption, mate, always full of gumption. Yeah, and then I got him a chair, and I got him a chair, driving a straight line, no problem, quite normal to drive an electric chair, maybe a little bit faster. Then I had to turn it left, and rather than turning left at half speed as a normal electric chair does, it turns at the same speed. Massive shot moment. Then Ferrin threw me on the pitch, and of course, me being me, watching running football and running rugby and all that sort of thing. I go to block off the space behind behind the defender, and they're like, Oh no, you've got to say three metres away from your opponent in power football. I'm like, God, that's not really gonna work for me. I describe myself as Lee Catamole, uh, twinned with uh Peter Clark, former at Everton and Trammid, he's been at roads of clubs, but that that's my style of play. I close down people and up poop the bit of a bruiser. So, right, okay, so I gave the power football a go. And I said, Oh, you know, you should come down and try out power hockey. And I thought, I'm not being funny, but my right hand, we call it Wavy Davy, because it flies up in the air. My right hand's not gonna be able to stay, my right hand's not gonna be able to hold a hockey stick. So there's no no way I'm gonna be playing hockey because I'm gonna knock people's heads off and all that. So I put it off six weeks and I continue to mention you should try out this power hockey because there's no two-on-one rule, you've not got to stay three metres away from your opponent. You can go in and as close as you want. I thought, right, okay, I'll give that a go eventually. And turned up, but was no stick, my fears were all wrong, but it's just a big bumper up the front of the chair. Same with power football bumper, similar to a power football bumper, similar size, but a different bumper to a power football bumper. And underneath the main bumper, it's got this metal thing with like two hooks coming out of it, and the hooks are what you use to balance the ball, Kieran. So what's it got like yeah, yeah, exactly. You've got two hooks coming out like that, yeah, and they balance the ball in, and you've got to balance this tiny little hockey ball inside these two hooks.

SPEAKER_01 38:16

Is it just a is it just a normal size hockey ball?

SPEAKER_00 38:19

Normal size hockey ball, nothing special about the hockey ball. Whilst you've got people trying to bash into you, and it's full contact, yeah. Full co full contact. Well, it's not full contact, it's contact ball, but it's not full. You can't go headfirst into somebody, that would be a bit dangerous, but you can certainly crash into the side for sure, and it's full contact. It's about basically a bunch of people, most of whom we've got CP and Duchense muscular dystrophy, bashing into each other whilst chasing after a hockey ball. I'll be honest with you, I don't call it power hockey, I call it power rugby to most of my friends and family. That is what it's mostly like it's like rugby, it's contact.

SPEAKER_01 39:02

You know is there a league? Like, are they a league?

SPEAKER_00 39:08

Indeed, we just announced the dates for the league. The league's gonna take place on the 16th of May and the 31st of May. The 16th of May will be in Wakefield in uh South or West Yorkshire. I can never decide which mature it is because it's close to Leeds for one and close to Sheffield for the other. So Wakefield on the 16th of May is the Northern Conference. I remember Southern Conference will be in um in Gloucester. It was originally supposed to be in Cardiff, but it'll be in Gloucester on the um 31st of May. But we do have a team in Cardiff, Kieran, if you'd like to come and try it out. We do sessions every Wednesday with the Cardiff City Community Foundation from 5 o'clock to 6 o'clock. They've got chairs, you sketching them and have a smash.

SPEAKER_01 39:53

So I don't like I'm not a chair user, but that doesn't matter. Doesn't matter, it doesn't matter.

SPEAKER_00 39:58

Yeah, yeah.

SPEAKER_01 39:59

Doesn't matter. And like could you possibly play for England?

SPEAKER_00 40:05

Is there another we don't have an international structure yet? There is an international structure to power hockey, but unfortunately, that is for the stick game. Our version of the sport and the way we play the sport, I can't wait power rugby, but the way we play the sport with the hooks and the contact and everything out of that, that's not internationally recognised by the international body. So we actually, you know, we need to have a conversation about that at some point, really, in terms of how we expand internationally. But we have we're we've got a very, very competitive league structure. The Cardiff team, the brilliant actually. They came second last year in the National League for really, really good bunch of lads.

SPEAKER_01 40:45

Um I think I might go down and give it a go, Alice. You know, that's really clear.

SPEAKER_00 40:52

It's more like football and more like rugby than any other sport I've seen, uh, for non-disabled people, sorry, for disabled people and people who see playing, especially. It's brilliant, you know.

SPEAKER_01 41:01

It's really and how important has like you talked about not wanting to be involved in sport and then no being involved. Like, how how important has participatory sport?

SPEAKER_00 41:14

And I say participatory God, I tried to say participatory sport rather than there's nothing like preaching to the converted, if that makes sense. I thought, oh, team sport's not for me, team sport's not gonna work, everything like that. And then suddenly I get involved, and lo and behold, I'm converted. Yes, team sport can be for me, yes, it is a thing that's out there, yes, I can do all this great stuff, and that was a moment that just made me go, wowza, you know, yeah, sort of thing. And that makes a massive difference, makes a massive difference to social mobility, social capital, in that I've now got loads of people who I can load to disabled people with similar experience. Oftentimes, it can guide me on stuff, but you should learn to drive using the most ability car. Yeah, I kind of failed that experiment.

SPEAKER_01 42:08

Uh I'm trying at the moment, so don't put me off. Don't put me off.

SPEAKER_00 42:13

Keeping on, Karen, keep on, keeping on. It's so hard. Oh, it really is, isn't it? It really is. And then even stuff like you know, bit or this adjustment, that adjustment might work for you. It's for looking things out about that. But my girlfriend's also got CP, and we go away, two wheelchair users, similar type of CP. We both play power sports, and we go away on camper van holidays, two wheelchairs, one camper van. It's brilliant. Just a standard sized camper van with a ramp on the side. You know, I get in for we've got a whole movement, we've got a whole way around it. There's a big bed at the back that we keep in, there's a projector for watching telly. You know what? It's brilliant, it's really, really good. But it's the liberating stuff of having people around you who've got similar experiences yourself that you're able to refer to stuff from. And oftentimes I find with CP when I speak to people with the impairment. Um, the thing that people often say is it's really socially isolating, especially when you get beyond the age of 21. You know, oftentimes if you get to uni, you get to college, you finish uni, you finish college, and then there's nothing there for you. Because, as we said, this situation around employment and accommodation, everything like that, is really, really difficult. So, um and people often just God, people often end up being socially isolated, away from peers, everything like that. That's where things like the value of team sport, and have being involved in a team and going down every Tuesday, every Wednesday, every Thursday night to do sessions, whatever it might be, can make a big difference, not just to your sense of self, but also not just you being part of a team, but also your sense of self, your sense of well being, comorbidities. I hate the phrase, but the comorbidities are things like anxiety and depression really disappear when you're part of a group team. That much.

SPEAKER_01 44:00

I found that I play tennis three times a week. I play football, and it's been such a benefit to my mental health and yeah, just the community of the other people that you're around. And yeah, it's so beneficial. I did want you to spoke about your girlfriend. I just want to ask one other thing. Like, your girlfriend's also got CP. Do you think that helps in a relationship that you kind of understand what it's like?

SPEAKER_00 44:28

I mean, I've dated an undisabled people before, and I mean honestly, it's so much easier dating a disabled person. But it's just a no, especially somebody of the same nature and condition as yourself, because there's just no bullshit there, really. Um, there's just no barriers, there's just no no problem when you kind of you know, you don't have oftentimes in a relationship with an undisabled person, you constantly find yourself having to explain yourself and having to explain the why you are and why you want things done.

SPEAKER_01 44:57

And and yeah, anxiety around that of are they gonna get it? Are they gonna yeah, sorry carry on?

SPEAKER_00 45:05

Yeah, when you're doing that, when you're you know, it's just so much easier not having to explain everything constantly, not having to explain yourself in your way of doing things. It just makes everything so much less tiring, and there's just no bullshit, really. You're not able to kind of you know fake stuff, you're just gonna you're just gonna dive straight in and face it, you know. It's brilliant, and we help each other with that relationship of mutual support when you need it. But also with non-disabled people, non-disabled people can oftentimes be very overbearing in the first stages of a relationship, and then after the first stage of a relationship, when you say you need help because they're around you more and everything like that, they can sometimes become a little bit bitter about uh helping you out with stuff and everything like that. But you know, being in a relationship with somebody with a similar nature of disabilities yourself means you don't have to constantly means there's not gonna be that problem there, it means there's not gonna be that potential barrier you're gonna come up against.

SPEAKER_01 46:04

Absolutely, thank you. And like it's given you know, I'm single at the moment, and there's that anxiety for me about like, are people gonna find me? Am I gonna meet someone? But like, what's been really interesting about these podcasts is talking to people with EP who are in happy, lovely, successful relationship, best of the most like the last question that I want to ask you for what is one thing, the only one thing that you wish people knew about CP?

SPEAKER_00 46:39

I think it's less about CP and more about disability in general. I think we as disabled people are our own best experts in terms of what we need in life, in terms of the adjustments we need to be able to work, to be able to study, to be able to have fruitful relationships, fruit family relationships, be they friends' relationships, family relationships, romantic relationships, whatever it may be. We're the people who are getting over the adjustments we need. So if we say we need something, respect it, sort of thing. Really respect kind of what we need, and you know, that way of doing that. So that that's that for me is the big thing. If I had a magic wand, I would make remote working an option for every single disabled person, every single person having a CP, and I make every employer have jobs that are available with that thing, because I think it would really open up and show what people with moderate, moderate to high support needs can really do in the workplace and in society.

SPEAKER_01 47:34

Thank you, Alice. I really enjoyed talking to you. Thank you so much for your time today.

SPEAKER_00 47:40

No, we're always kidding, it's been a veritable pleasure.

SPEAKER_01 47:43

And thank you so much for listening to this episode of Evolve Podcast or watching on YouTube. Please stay tuned for more episodes every day for the rest of CP Awareness 2026. We're into the home straight now. We've got about uh 10, 11 episodes to go, but we've got loads more interesting people coming up, so please stay tuned. And if you've got any questions about CP or about any of my guests, please feel free to comment or message me, and I'll ask my future guests on the next episode. But for now, it's goodbye for me, and it's goodbye from Alice. Goodbye! What Hugh and Millie want to say is Alpha Spawns.

SPEAKER_00 48:33

Bye!

SPEAKER_01 48:35

Thank you for listening to this episode of the Palsy Podcast with me, Hugh and Fitzgerald. I want to thank my guests for joining me, and I hope that you'll stay tuned for the next episode. Thank you.